Tuesday, 30 April 2013

My Big Project

I've been promising to share photos of my current big project as I actually get some work done on it.

So here's the point I've got my daughter's wedding cake to so far:



The swans will be in the centre of the top tier of the cake. (My daughter wasn't especially keen on the plastic bride and groom dolls we saw at the shop when I was buying cake supplies, so I came up with this as an alternative.)


These are the beginnings of a couple of dozen open roses.  (Blue, to match the roses in her bouquet.)


And believe it or not, these little blue globs will be the centre of closed roses.


It's going to be two tiers, with columns supporting the second tier.  The bottom will be chocolate mud cake, and the top will be white chocolate mud cake.  (The groom doesn't like fruit cake, which is what I'd normally use for a decorated cake because it stays fresh so much longer.)

I had started doing wired roses, to stand up from the cake, but changed my mind after making the swans - so now I'll either do a circle or heart of roses on each tier, with the swans in the centre of the top one. Depending on time, and how my hands cope with the challenge, I might do a couple of little floodwork butterflies tucked among the roses as well.

I am enjoying doing this.  It's years since I've made a cake like this.  With the kids growing up, what I've mostly made are kiddy-style cakes. 

It is much more difficult than I remember it being,  partly because it's a very long time since I've used these skills, but mostly because my hands get sore quickly and I become very tired very fast, so I'm working in small bursts with frequent breaks. (And not getting much else around the house done while I'm doing it.) My poor son is getting used to the idea that we just won't have a dining table available until after the wedding. 

Of course, I haven't forgotten my other major project - the Warriors' Wall that goes live on this site on World Lupus Day (10th of May).  If you'd like to be part of it, there's still plenty of time to send me your details.   Email me a nice, big, clear photo of yourself, with your first name, year diagnosed, country, and what you'd like to tell the world about lupus (up to 100 words.) 

Monday, 29 April 2013

Lupie Cats

The HAWMC post prompt for today was to give three things I love about myself or do well.

Well, how is that going to raise lupus awareness? These prompts are getting quite ridiculous.  So glad tomorrow is the last day and I can go back to just writing whatever I feel like.

Here are some pictures of cats from lupus.cheezburger.com.








If you liked those, there's lots more lupie cats over on lupus.cheezburger.com.

I'm off to make sugar paste flowers for my lovely daughter's wedding cake. 

This post written as part of Wego Health's Health Activist Writers' Month Challenge.



Sunday, 28 April 2013

Great Lupus Facebook Pages

A while ago, I invented an "award" for on-line lupus support and advocacy.

Today, I'm sharing with you five lupus-related Facebook pages which are well worth following, and which definitely deserve an award.


  1. World According to Lupus (OK, I already gave Atlanta this award, but I made up the award, I can make the rules for it.)
  2. Lupus and Me 
  3. The Lupus Effect
  4. Mrs Lupus
  5. Teens With Lupus
This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Saturday, 27 April 2013

By The Book

Books I've written.
Available from Lulu, iBookstore and Amazon.
As regular readers know, I've written a book to help lupies manage our medications, medical appointments, etc.

I'm starting to think about writing another book related to lupus.  I have a few ideas.


  • Butterfly Kisses would be a fictional story, about a lupus patient's attempts at romance and to live life in general around lupus.
  • Fighting the Wolf would an actual look at my life and experiences, etc, pretty much based on this blog.
  • The Big, Bad, Wolf would be a fairy tale, but would have one chapter of fairy tale, followed by a chapter explaining how that relates to real life with lupus.
  • It's Lupus, What Now? Would be a factual, hopefully reassuring, book of information specifically for people newly-diagnosed. 
  • What I Wish You Knew would be for friends and family of people with lupus, telling them the things lupies wish they understood.
OK, there's some ideas. (Please, no-one else steal them.) 

What do you think I should write first?

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Friday, 26 April 2013

A Day Without Pain...

"What I want for my birthday?
A day without pain."
For healthy people, pain means there's something wrong.

For lupies, pain means it's just another normal day.

I'd like to think that if I had a day completely without pain, I'd spend it doing something fun, exciting, and completely out of my normal routine. But, really, I don't think I would.

Lupus has conditioned me to know that if I do too much on any one day, I will pay for it the next day.  So if I had a pain-free day, I'd probably still not do anything much different - but I would definitely savour being able to stick to my normal routine without everything hurting. I wouldn't do anything out of the ordinary, but I would enjoy the ordinary much, much, more.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.


Thursday, 25 April 2013

If Only There Was A.....

After my post about abandoning the Health Activist Writers' Month Challenge, because I'd lost the topics, lovely Lorna from lifewithraisapain.com sent me a copy of them. So I guess I'm back in the game.

Lupus Book
One of the prompts I missed asks about what app, gadget or whatever you'd like someone to invent for your condition.

I actually faced this issue last year. I wanted some way to keep all my information about lupus in one place. Somewhere I could easily note questions for the next appointment with whichever doctor, could track what I had to do before the next appointment, etc.

Because I kind of grew up with the idea that if you see a need, you're elected, I did something about it.  I don't have the skills to make a phone app, so I wrote a book.

You can see the layout in my earlier post Lupus Book.

This first edition has sections for keeping a schedule of medications; emergency contact information; doctors' contact information; questions, changed symptoms, notes, etc for doctor's visits. Mine has post-it notes sticking out of it everywhere - one  post-it for each doctor, as I put a new appointment in the book, I move that doctor's post-it to that page where the next appointment is listed.

I've been looking at changes for the next edition to include a more detailed medication section (sufficient to allow someone else to do the pill sorting if need be) - which was suggested by a pharmacist. I'm also thinking of doing a shopping list section, for trips to the pharmacy.

It's a bit bulkier to carry around than a phone app, but I can paperclip referral letters, prescriptions, etc to the relevant pages (which I couldn't have done with a phone app.)

It works for me.  I haven't heard back from any of the people who have bought it, but would love to know if it works well for other people, and what they'd like to see different in the second edition.

If you think it might work for you, it's only available on the internet, and is cheapest directly from the publisher.  Find it at http://www.lulu.com/spotlight/IrisCarden.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Wednesday, 24 April 2013

Close Enough

lupus.cheezburger.com
Well, I don't know whether to blame brain fog or a psychotic computer, but I've lost the prompts for the
Health Activist Writers' Month Challenge. It wasn't on my computer any more when I turned it on yesterday.

So this time around, I'm not finishing the whole challenge, but hey, I made it three-quarters of the way through.

There was a time that not finishing something would have bothered me. That was back when I was a perfectionist, and always expected the best from myself.

Lupus has taught me to accept a lot.

I now know that:

  • It's better to find the easy way to do things.
  • Close enough is usually quite good enough.
  • If the worst consequence of a mistake doesn't actually maim anyone, the mistake wasn't that bad.
  • Procrastination is sometimes a survival mechanism.
  • Not all problems have solutions. So I'm not a failure if I can't solve everything.
  • Plates, cups, etc, even the ones marketed as unbreakable, will break when they randomly attack me. It's just stuff. It doesn't matter.
  • If I can find one good thing about a day - it's a good day.
  • I don't have to be the best at anything I do. It's OK just to be me.
  • Little things are worth being happy about, but not worth getting upset over.
  • Housework is never actually finished, so there's no point in feeling guilty about not getting it all done.
  • I need to find ways to enjoy the life I have now, because any wonderful future I plan might not happen.
  • Even if I don't get out much, the internet enables me to have a social life, and to know some wonderful people.


Monday, 22 April 2013

Business of the Week: JulieYarnDesigns

This weeks Lupus Business Directory Business of the Week is:




JulieYarnDesigns
Handcrafted scarves, etc by Julie (multiple autoimmune conditions)


Julie says:

I love to be outdoors, but when I'm stuck inside, a pair of needles and some yarn are the way to go. I'll knit on the train, in the car (when I'm not driving!), while reading a book, or while watching a movie. Friends tease me that I can't just sit and do nothing. What can I say? I love to keep my hands busy. (Taken from her site.)

Remember, when you buy products from businesses in the Lupus Business Directory, you are helping people with a chronic illness towards financial independence.

The Little Things

Yesterday, I posted about depression, so it makes sense that today should be a little more positive.
Mr Woof - the old dog who just likes to be wherever I am.

There are some things that do make me feel especially good.  Not just the big things, like the amazing friends who gave me money and loaned me money for the move. (Which would have been pretty much impossible without them.)

Sometimes, it's a little thing that really makes my day. Sometimes, it's just the old dog who likes to be with me wherever I am, or a text message from my daughter. It's sitting with my son having a coffee and talking about what's on the news. It's my wonderful friend/upstairs neighbour/landlady bringing me a week's supply of vegetable soup because I have a cold. It's practicing the art of being a cat bed. It's getting a royalty payment of $8 for the month from my publisher, and realising someone has thought enough of something I've written to actually buy it. It's another lupie sending me a supportive message or saying they appreciate something I've done.

I could spend my life miserable about being in pain, being tired all the time, not knowing what the future will hold. But there's too much good in  my life to be miserable. And often it's the little things that make me happiest.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Sunday, 21 April 2013

Blooming Adversity

Today's #HAWMC topic was a quote from Mulan about flowers blooming in adversity....
lupus.cheezburger.com

Do you know what I do in adversity? I go back to bed.

Seriously.

Lupus is bad enough.  I don't need to push myself when it's flaring, because that would make it even worse.

And if I have something like, a head cold, and push myself through that, it could bring on a major flare.

Right now I have a head cold. I'm rather glad I had a flu shot, because I can tell you a head cold is quite bad enough.

So I'm going back to bed.

This post written as part of  Wego Health's Health Activist Writers' Month Challenge.

Saturday, 20 April 2013

Lassie, Get Help

Let's talk about a serious issue today.

Depression is a pretty common experience for people with chronic illnesses.

I've heard there's a difference between clinical depression - caused by unbalanced brain chemicals, and reactive depression - caused by a reaction to overwhelming circumstances.  From experience, I think it's probably usually a bit of both.

There is an element of "this is the circumstance I'm in, and if I look at it in another way and use CBT (cognitive behavioural therapy) skills, I can work my way out of it."  But there's also, for me at least, often a need for the medication as well.  I know there was once a stigma about taking anti-depressant medication, but honestly, I can't see depression as all that different from any of my other symptoms and I take medication for them, so why not this one as well?

For me, depression is something I can visualise as like being at the bottom of a deep pit or well. There's daylight up there, but it's just so far away. (And the worse things seem, the further away it is. ) When I'm in the bottom of the pit, I can understand how some people can give up and decide it's all too much.

I can't give up. Too many people would be hurt if I did.

So, I have to climb, no matter how hard it is, to drag myself out of the pit.

The tools I use are prayer, medication, and cognitive therapy.

Cognitive therapy works on the idea that how we think about a thing affects how we feel about it. Sometimes we have to look at our thoughts and assumptions and realise that they're faulty, before we can feel better about them.  One of the best resources I have found for an introduction to cognitive therapy is Dr David Burns' book Feeling Good: The New Mood Therapy.

Here's a quick summary of the kinds of faulty thinking that lead to depression:

  1. All or nothing thinking.  This is the thought that if I'm not perfect, I'm no good at all. Or one bad thing happened today so the whole day is a disaster. I messed up on my diet at lunchtime, so I may as well just chuck it in for the whole day, week, month, for ever....  It's faulty thinking because the real world isn't usually black and white. It's shades of grey.  And close enough is very often  good enough.
  2. Overgeneralization. This is the thought that this one little example is the whole of everything. An example might be: the cat is always puking on my bed.  In reality, he's seven years old, and he's done it probably three or four times. If I'm going to look at the reality of the situation, that's far from "always" happening. This is the thought process that takes one person saying something mean to me and turns it into "everybody hates me".  If you step back and look at it, it's obviously not true. In the real world, one little thing (or even one big thing), is just that one thing, it's not everything.
  3. Mental filter.  It's possible to get into the mindset of just seeing everything as bad, or that something not living up to your expectations is a disaster. Take the student who usually gets High Distinctions, who discovers they have a Distinction on a subject.  For a person with a mental filter which says if they are smart they will always get High Distinctions, that is a disaster and they are dumb.  For the student who always gets by on Passes, that Distinction is an amazing thing to be coveted. Sometimes, we can't see the truth because of our filters. In the real world, we sometimes have to ask ourselves if this really is the way we're seeing it, or if we're applying some unrealistic filter.
  4. Disqualifying the positive.  This is the faulty thinking that says none of the good stuff matters because this bad thing happened. For an example I'd like to tell you about a small boy I babysat recently.  He had been in trouble for some naughtiness just before I took over, and was crying about it. When I asked him what good things had happened that day he said, "Nothing good happened. Mum yelled at me."  Then I asked about specific things I knew his family had done. He agreed that he'd gone to the playground and had a great time, and had lunch at McDonalds and enjoyed that, and then been for a ride on his scooter, etc, etc.  He'd had a great day. But until he was specifically asked about it, all he could think of was the one bad thing that happened. In the real world, if what happens to us is 90% good and 10% bad, we're doing pretty well. 
  5. Jumping to conclusions. There's two parts to this: Mind reading and Fortune telling. Mind reading is when someone does something and I think this is about me. You can identify mind reading when you find yourself thinking "they're doing this to me".  Most of the time, they're actually just doing what suits them and may not even have any knowledge or interest in how their actions affect me.  In the real world, I am not so important to other people that all their actions are designed specifically to affect me. Fortune telling is when we decide we can predict the future. (In depression, we predict the worst possible). Fortune telling will say something like this: this flare is going to go on for ever and never get any better, I'm just going to get sicker and sicker and more and more miserable. It ignores that flares are unpredictable, and decides the worst possible scenario is what will happen.  In the real world, we don't know what tomorrow brings. Things, both good and bad, can happen unexpectedly. 
  6. Magnification and minimization. In a depressed mindset, it's easier to make bad things bigger than they are and good things smaller than they are, especially things about ourselves. Magnification is when your own faults or fears are bigger than anyone else's and they overpower everything else, it's when I don't deserve friends because I let one down and couldn't go out because I was sick. Minimisation is when we make our good qualities small and unimportant, it's when I spend days working on something for someone, but it's no big deal, it's not like it was anything special. In the real world, most of us are no better or worse than anyone else. We have good qualities and bad, and unless we're serial killers or something like that, we're probably more good than bad.
  7. Emotional reasoning.  This is the thinking that goes "I feel therefore I am..." I feel embarrassed, therefore I've done something wrong and the whole world must be watching me and judging me.  I feel guilty, therefore I must have done a really bad thing. I feel like a failure, therefore I am a failure.  In the real world, feelings aren't the best evidence of reality, especially when we're depressed to start with. 
  8. Should statements. Another chaplain I used to work with used to often say, "Don't should on yourself." When we give ourselves a list of shoulds: I should lose weight, I should get the dishes done, I should be more efficient, etc, we end up just feeling frustrated at all the things we should be and do and just never quite get there with the whole list. This leads to us feeling guilty and resenting all the things we "should" do, and often means none of it gets done.  When we apply "should" to someone else, we usually find other people aren't perfect and end up angry or resentful that they don't do everything they should do.  In the real world, human beings aren't perfect. We won't always meet our own, or others' expectations. We need to allow room for people (including ourselves) to fail once in a while, without that being a failure of everything.
  9. Labelling and mislabelling. Labelling is great in the kitchen when we want to know the difference between the plain flour and self raising flour canisters. It's not such a good idea when we apply labels to ourselves or each other.  If I call myself a "loser" or a "failure", that's how I'm going to come to see myself. In the real world, if I make a mistake, I made a mistake, I'm not a "failure".  I am more than the things I do right or wrong. And everyone else is more than the things they do right or wrong as well.
  10. Personalisation. This is when everything is about me. It's all my fault (even if I had no actual control over any of it.) My son missed the bus because I didn't wake him up (even though he's now an adult, he has an alarm and has been waking himself up for years). Personalisation leads to heaps of unnecessary and inappropriate guilt.  In the real world I am not omnipotent, and I don't control everything. I'm not responsible for all those things that are beyond my control.


A lot of depression can be tracked back to these faulty thought patterns. Sometimes, just doing the work of thinking through all the things that have happened lately and how I have thought about them and how that has led me to how I am feeling, can be all I need to do to climb out of the pit.

Sometimes, I realise that the "depression" isn't really "depression" at all. I'm just "feeling lousy" because I'm physically in a lupus flare, and the best thing to do about it is to go back to bed until I feel better. That happens in the real world, too.


Reference: BURNS, David MD.  Feeling Good: The New Mood Therapy. HarperCollins e-books.



Depressed? Need someone to talk to?  From anywhere in Australia call Lifeline on 131114.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.




Friday, 19 April 2013

The Bomb Began to Tick...


This is me, 23 years ago and 1800km away.

It was long, long before my lupus was diagnosed, but even then I had been through health problems that most people don't encounter.  I'd had surgery four times by then. I'd had rashes whenever I went out in the sun for about 13 years by then. And I'd had my knees just give out on me after climbing multiple flights of stairs for at least 10 years by then (I'd found out when I went to a high school that that multiple flights of stairs.) Right from childhood, I'd gone through mysterious pains in odd places, that my parents simply believed I was making up - so I hadn't been to a doctor for them. 

My body was a time bomb, and I didn't know it. 

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Thursday, 18 April 2013

A Little Short of Brain Power

lupus.cheezburger.com
I took a look at the HAWMC topic for today, realised I just don't have the brain power for it, and am posting off-topic.

I don't have the brain power for much today - I'm suffering a bit from the dreaded lupus brain fog.

About 80% of people with lupus will get some cognitive dysfunction. So I'm far from alone in having days when I just can't think straight.

Brain fog can lead to lots of amusing stories, like how I locked up the house for the night, but left the keys in the door from when I'd come in, so any burglar could just have turned the key and walked in. (But I have a back-up security system. A burglar would have tripped over the dog and the cat and been seriously injured.) I've also had the smoke detector remind me I've got something on the stove.

It's funny after the event.  And it's not such a big problem when it just happens now and then.

When it happens consistently, it can be frightening.  I had an extended bout of brain fog a few months back that left me wondering if perhaps I was suffering from early-onset dementia.  I became terrified that I would do something incredibly dangerous and not even know it.

For most of us, brain fog is often frustrating, sometimes frightening, and only occasionally funny.

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

Tuesday, 16 April 2013

True or False?

How much do you know about lupus? Answer these ten true or false questions, then scroll down past the pictures to see if you have the answers right.


  1. If it's diagnosed early, lupus can be cured.
  2. Lupus is more common than breast cancer.
  3. Lupus is never fatal.
  4. Lupus can be prevented.
  5. You can't tell how sick a lupus patient is by looking at them.
  6. Only women get lupus.
  7. Children can get lupus.
  8. Some of the drugs prescribed for lupus are actually chemotherapy drugs used for cancer, and antimalarial drugs.
  9. Lupus patients should stay out of the sun.
  10. Improving nutrition will cure lupus.









1 - False. Lupus is (so far) incurable. Hopefully, medical research will eventually reach a point where lupus can be cured. 2 - True. Lupus is far more common than many people realise. 3 - False, lupus can cause organ failure, causing death. 4 - False. The cause of lupus is still unknown, so there is no way to prevent it. 5 - True. Most of the symptoms of lupus are invisible. False - 10% of people with lupus are men.  7 - True.  Lupus does not begin at particular age. 8 - True. Very few lupus drugs were specifically developed for lupus. 9 - True. Many lupus patients are photosensitive and can get rashes or full-blown lupus flares from sunlight. The ultraviolet light in fluorescent lighting can also affect lupus patients, so sun protection is even important inside and at night. 10 - False. Good nutrition is always a good idea, but it will not cure lupus.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Monday, 15 April 2013

It's Not Just The Patient

lupus.cheezburger.com
I was meant to do a comment on someone else's post as my HAWMC topic for today.

Well, you can guess what happened, I started reading other blogs, and continued reading other blogs, and
that took up all the morning....

So getting back to this in the early evening, I still haven't found a post about lupus to put a comment on as such, but this post has been bothering me all day....

It shows just how far-reaching the effects of a chronic illness can be.

I found this in Dr Shashank Akerkar's blog (he's a rheumatologist, whose blog actually covers two websites Arthritis Support Board and Arthritis Support Board 2.

Take a look at this post of his:  Help Me Help This Lady with Ankolysing Spondylitis. Go on, I'll wait here until you get back.....

Pretty awful situation, huh?  My heart just breaks for this woman.

It's a very different culture from mine, and AS isn't the same as lupus, but do you know what? There's some things that are the same no matter where you are and no matter which horrible chronic illness you're dealing with.

A chronic illness doesn't just affect the patient.  It affects our families, our friends, everyone who is close to us. And it can destroy relationships and marriages, if the healthy partner is not willing to accept the other's limitations.

There's no going into a new relationship and keeping an illness a "secret" - it will become obvious with the next flare anyway, and then it looks like we've been trying to con the other person.

From personal experience, I can tell you that long before my lupus was diagnosed, my ex-husband was simply convinced that I was lazy. When I tried dating for a while, I ensured I was always up-front about my condition, so as not to have unpleasant surprises for anyone. (And certainly didn't need to go through all the attempts to try to do more so as not to look lazy.)

I've reached the point where I've realised that it's just easier for me to not be in a relationship. No boyfriend/husband means I'm not letting someone down and not irritating them by the  things I can't do. And I'm not risking my health trying to please someone else.

The story hasn't been the same for everyone I know with a chronic illness. I know of some lupus patients who have married, and whose partners are incredibly loving, supportive and understanding. Having a successful relationship is clearly possible, but it does take work, and it takes a lot of grace from the healthy partner.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Sunday, 14 April 2013

And the Award Goes To....

Have you seen those blogging "awards" given by one blogger to another? They're a nice idea, and it is nice to know that another blogger thinks you're worthy of an award, but there's so many strings attached - you have to answer a set of questions, acknowledge where you got the award from, and forward it on to so many more bloggers. It's kind of like a chain letter or email.

Today, I'm inventing my own blogging (well, on-line advocacy/awareness) award for lupus.

There's no catch to this one.  The recipients don't have to formally accept it, they don't have to pass it on, they don't even have to tell anyone they got it if they don't feel like it.

The judging criteria for the award is simple: I'm impressed with something you've done. (That's nice and objective isn't it?) It will be awarded on an irregular basis, whenever I feel like it.

Without further ado, the Inaugural Too Many Pills Awards for Lupus Leadership go to.....

For keeping lupies entertained and informed simultaneously, an award has to go to Atlanta Titus at World According to Lupus on Facebook and on Twitter and Pinterest.

For encouraging people to advocate for all kinds of Chronic Illness through her Chronically Awesome Facebook page and the Blog Support Daily, and award ought to go Jules Shapiro.

And for always being there whenever a lupie needs someone on Twitter, I think I'd give an award to Sheri (Lupus Diva)  @osaxy on Twitter.

There's lots more I'd like to give an award to, so maybe the Too Many Pills Award for Lupus Leadership will become a regular feature of sometimesitislupus.com .

This post written as part of Wego Health's Health Activist Writer's Month Challenge.





Saturday, 13 April 2013

Lupus Butterfly

by Angela Roarke

Angela Roarke
You see me fly around as if nothing is wrong....
You see my beautifully coloured wings flap back and forth...
What you don't see is the pain that is retching through my body...
What you don't see is the river of tears that I hide behind...
I am the lonely among you...
a sheltered life wrapped around in this cocoon of mine...
just to be invisible from your reality...
so as my life goes on, you will only see the reflections of me flying around as if nothing is wrong...
I am a beautiful lupus butterfly.


(Used with permission.)

Ask an Expert: How to Hide Thinning Hair

Lots of lupies struggle with hair falls from time to time.  Some lose all their hair, others, like me, just find they have thinner hair and lots more visible scalp.

Here's a video from American hairdresser Daniel Robb (from YouTube) explaining some of the things women can do to disguise thinning hair. (I used the layered hair option.)



The Stress of Living with a Chronic Illness

lupus.cheezburger.com
As I write this, I realise I still have to catch up on doing dishes, the dog needs a bath, I haven't finished
writing a church service for Sunday, and there's other housework to do, and I'm supposed to do some yoga or some other exercise to try to keep everything moving, and I'm just too tired for any of it.

That last one is the problem.  I'm just too tired. Sometimes, I'm just too sore. Sometimes, it's both.

Whatever it is, I get behind on things that wouldn't be an issue for a healthy person. When I have to ration out my energy, it becomes a problem when I get behind, because catching up takes a lot more out of me than it would a healthy person. So I just get behinder and behinderer (those are real words, I promise they are.)

Another stress is financial. I often can't work at all, and when I can, it's only very, very part-time. That means limited money. Sometimes the basics of survival have cost more than my income (one of the big reasons for my latest move of house was that my rent had increased to the point where it cost more than my income) which has meant a steadily-growing debt, and an inadequate means to service the debt.

And then there's the biggest cause of stress of them all: what will lupus do to me?  There's always going to be anxiety about what the next surprise lupus will throw at me will be.  There's so many things it can decide to do for no apparent reason.  I live in fear of becoming a burden on my kids.

Everyone who lives with a chronic illness lives with some degree of stress. A lot of the choices healthy people have about how they will live their lives, are just far more limited for us. We get into difficult financial or living situations because of our conditions. Sometimes we get brain fog and can't even think straight (a real trauma for an intelligent, educated person.) And we all know that whatever our chronic conditions are doing to us, things could always get worse.

This post written as part of Patients for a Moment Blog Carnival, which this month is being hosted by Selina at Oh My Aches and Pains.

Lupus Acrostic

Living with lupus means
Unbearable fatigue,
Pain everywhere,
Ugly rashes,
So many other problems.


This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Friday, 12 April 2013

lf I Could Turn Back Time

If I could go back in time to the day I was diagnosed and speak with myself, I probably wouldn't. I've seen
lupus.cheezburger.com
enough science fiction to know that never ends well.

But, supposing I did, the conversation might go something like this...

Me Now: Bit of a shock, huh?

Me Then: You can say that again.

Me Now: It explains a lot,  though.  All those unexplained aches and pains. Those rashes from sunlight when we were a kid. It might even explain the nose-bleeds, I've heard from some other lupies that they had nose-bleeds when they were kids, too.

Me Then: What's a lupie?

Me Now: A shorthand way of saying someone with lupus. You'll get used you it.  And another word you'll hear a lot is "spoonie".  Go to an internet site called butyoudontlooksick.com and read the bit headed "The Spoon Theory", you'll get it then.

Me Then: So what happens now? What if I don't live to raise the kids?

Me Now: Well, I know you do.  But making that will you're thinking about is still a good idea.  Not because you're about to die, but because it's a good idea to not have to worry about that one thing.  You're going to find lots of things to worry about. First thing you need to learn is to work out what to do about them.  Some things you can do something about, some things you can't.  If you can do something about them, do it, because that will cut down on your stress levels.

Me Then: It's all just a bit overwhelming. Can you tell me some of this after I've had time to process?

Me Now: Do you know how hard time travel is? This is the one chance.  After this you're on your own. Technically you are now since I'm you.

Me Then: So just tell me what's most important. If you're me, you know I'm having a bheit of trouble getting my head around it.

Me Now: OK. This is the big thing.  It's going to get rough. You're a single mum, in the middle of a divorce, starting out with nothing again, and two kids. Now you're just starting to get sick. You're going to get much,  sicker.  You've just started to get your life re-established, and it's all going into turmoil again.

Me Then: Well, that was very reassuring. Thank you so much.

Me Now:  No, what I want to say is this: You don't have to do it alone.  In fact, don't try it alone. Just for once, don't be the self-reliant superwoman. Find a support network, and start looking for one that suits you straight away.  The people you normally turn to for support and advice have no idea about what you are going through and what you can expect for the years ahead. Some of them are going to minimise it all, because this is so far outside of their experience. Find other people with lupus.  Find groups face-to-face and on-line.  And don't worry too much. Things will get bad, but there's nothing God can't get you through, and you are about to meet some of the most incredible people in the world. You'll find them on the internet - look for lupus support groups, that will get you started.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Thursday, 11 April 2013

New Project

After the incredible response I had to the request for pictures for the What Lupus Looks Like post, I've realised that lots of people want the chance to speak up for lupus awareness.

So, I have a new project planned.

A new page will go live on Sometimes, it is Lupus on World Lupus Day, the 10th of May.

The page is going to be called "Warriors Wall", and will show pictures of people who are fighting against lupus.   I'll be able to continue to add to it as people send me information (the way I do with the Lupus Business Directory and Lupus Links pages.)

If you want to be a part of it, please send me an email.

In the subject line put "Warriors Wall".

In the email, give me your first name, year diagnosed, country, and one thing you'd like to say to the world about lupus (please no more than 100 words.) And please attach a nice big clear photo (small thumbnail photos don't enlarge very well.)

Entries on the page will look something like this:


Iris
Diagnosed 2007
Australia
"Lupus doesn't just affect the people who have it, but also our family and friends, and it puts a huge burden on the healthcare and social security systems. We need a cure."

Playing Favourites

lupus.cheezburger.com
HAWMC today asks what my favourite social media is....

I guess it has to be Facebook, not just because it's the first one I tried, but also because it's where I have met so many (more than 1700 at the moment) wonderful lupies, on the Sometimes, it is Lupus Facebook Page.

Having said that, I've also met some amazing people on Google+ and on Twitter, and even though we will probably never meet in real life, I am so glad to know them.

Social media has made a huge difference to my life.  Since I stopped work, I could easily have started to feel isolated. Now, I have a community I am part of all the time. Day and night there's always someone on-line.

Yesterday's incredible post, What Lupus Looks Like was only possible with so many wonderful people responding to a request on social media (with less than a day's notice) for their photos and permission to use them.

I know lots of generations of lupies fought this disease without the internet, but I am so glad it's available for me, and for those others I have met through the net. Whatever happens, none of us is alone. Someone who understands is as close as the computer.

This post written as part of Wego Health's Health Activist Writers' Month Challenge.

Wednesday, 10 April 2013

What Lupus Looks Like

Q: Which of these people have lupus?































































































A: We all do!

Lupus is invisible. 

You can't see that we're all fighting for our lives.


This post written as part of Wego Health's Health Activist Writers' Month Challenge.  (It was meant to be "Wordless Wednesday", but I can't resist using a few words.)

Special thanks to all the brave and beautiful lupies who offered their photos (on very short notice) for this post.